Writing about the threads of happiness that are inextricably woven through the cloth of my life keeps me Walking on the Happy Side of Life. Walk with me as I share my life as Mom to 3 wonderful children -- including identical twins blessed with an extra 21st chromosome each -- a condition known as Down syndrome.

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Saturday, May 23, 2009

Foreword: Profiling is acting based on predisposed beliefs of a group stereotype. In a scene from Men In Black II - Michael's current favorite -- Agent J's newest partner, Frank (a pug dog), accuses J of canine profiling. If you've read any of my previous posts on Down syndrome Awareness, you know that as a parent of 4-year-old identical twin boys who happen to have Down syndrome, I'm completely against profiling of any kind... Even canine (after all, I have a very non-aggressive Chow Chow). However, in this case, "Tenacious Parenting" just doesn't quite embody the same spirit as "Pit-Bull Parenting". So, please pardon my breach of etiquette as I use canine stereotyping that may not be accurate for all members of the Pit Bull genus but certainly rings true as a stereotypical analogy for this parent of children with special needs.

Why Pit Bull Parenting? In the fight for services for my children, I have come to realize that I have to be more than tenacious. I learned quickly, going into this fight, that there is no rest for the weary and that I can never give up the fight. Throwing in the towel is not an option. As the mother of children with special needs, I realize I must approach some parenting tasks more like a pit bull -- [figuratively] bloody and scarred from the last round, I get back in the ring to ensure that my children receive all the help, services and attention they need to foster their development. I do it because I am their mother. I do it because, more often than not, no one else will. I do it because no one else needs to like I do.

For some, providing services is just a job that ends each day at 5:00pm. For me, as a parent, making sure my boys have everything they need is in my nature. It is my life. Like a pit bull - who, by the way, has a structurally wider-set and, therefore, physically stronger jaw than other dogs -- I will not/cannot give up. I continue to hang on, re-strategizing perhaps, until I win the fight. I've heard what happens to the losing dog and that cannot happen here. I am fighting for the independent lives and well-being of my children.

Following the pit bull analogy, unless inbred for fighting -- which, thankfully, I was not -- they can also be very smart (read: trainable. No, I'm not tooting my own intellectual horn, here) and loving dogs. Females are notoriously good mothers, appropriately protective and caring for their pups until they are able to live independently. A well-bred, well-trained pit knows when to fight and fights to win but also watches and waits for signs that there is danger afoot and a fight is forthcoming and inevitable.

I'd like to think I'm like the well-bred (not inbred), trainable (if not yet well-trained) mother pit with a calm and loving nature and built-in tenacity for the utmost endurance when it comes to raising my children. I know that I'm in this fight for the long haul... until my children are grown and living independently. I also realize that not every interaction is, or leads to, a fight. Thus far, in my dealings with service providers, I have mostly found the agencies and therapists more than helpful and willing to provide information to me and appropriate services for my boys. When I sensed resistance, I fought smart by finding a way to garner the services without breaking the rules or antagonizing the other dogs (remember it's JUST an analogy!).

When the boys' new preschool representatives and the NY state service-level guidelines indicated that speech services 3x weekly were warranted based on their evaluations, I knew that they needed more. So, I requested an evaluation 1 month into their new school year to be performed by someone who was not familiar with them -- unlike the former evals done by their Early Intervention (EI) speech therapist who was well acquainted with their idiosyncratic articulation problems. The new results indicated that they could not be understood at least 75% of the time by a stranger, as the guidelines are written, so another speech session was added. When the ending bell rang, the round was awarded to me... Actually, to my boys because they got what they needed, and were legitimately entitled to, to facilitate their speech development!

In another situation, I'm still in the ring. Admittedly, it has not been my strongest showing as I backed off for awhile. I had other more critical fights to fight and was less sure of myself than I should have been. Late in the EI process, the boys briefly used UCLB orthotics for pronation and arch support due to ligament and tendon laxity (they have mildly relaxed ankles and a natural arch that collapses under their weight). At that time, the need for the shoe-fitted orthotic was borderline and our trusted Physical Therapist (PT) was testing them with and without the orthotics to further determine effectiveness to address their particular weaknesses as well as potential problems the braces introduced themselves. We were in the process of attempting to have the orthotics cut back to half-foot when the boys transitioned out of EI to preschool. With the encouragement of our EI PT, I requested that our newly assigned PT examine the boys' feet and ankles and help determine the need for the continuation or alteration of the UCLB orthotics. After several attempts -- read: many many communications both oral and written -- the PT did not engage, failed to respond to my inquiries and I finally -- unlike a good, tenacious pit bull -- backed off. In my defense, it did not seem the time or place for that fight. AND, I had other fights on my ticket. Recently, that PT -- my would-be opponent in this fight -- served up some information that indicates the match is on again. After attending a seminar about a new, soft orthotic, she sent out a generic note to us parents of children with Down syndrome (did I mention I hate profiling?) about how their low muscle tone is an indicator that they should be using these newfangled orthotics. Suddenly finding myself re-engaged, I mentioned my earlier requests made to her no less than 6 months ago and, though she acknowledged me, she did not excuse herself, but rather went on to explain that these new orthotics would solve the problem... The one I'd asked her to evaluate in September, October, November and December of 2008. STILL, I don't believe she has specifically evaluated my boys' borderline low muscle tone for their orthotic support needs as individuals. The assumption is, since they have Down syndrome, they have low muscle tone which results in pronation that requires correcting. All three statements may or may not be correct to some degree for my boys or anyone with Down syndrome... The thing is, I don't believe she has even LOOKED at my guys bare feet. (Did I mention I hate profiling?) Honestly, I'd eat her up in the ring. It wouldn't be a fair fight so I am refusing any fight and choosing, instead, to go right to the boys' former Orthopaedic specialist to determine their specific needs. I mean, why get in the ring with a less-engaging dog when I can go to the pros? Right? If they say the medical need for ankle/arch support exists, then I believe it does. I will have my trusted orthopaedic guy review the literature our PT gave us on this newfangled orthotic and get his professional opinion on it's potential efficacy for my boys' needs. Because I trust him. Given our history, at this point, I don't have the same faith in their PT.

I think this is also a big part of pit bull parenting... Learning who to trust. And, trusting your gut about who may not be trustworthy... then, always keeping an eye on them. And, watching the older dogs (those with older children with Down syndrome, in my case), the pro dogs (professionals with specific experience treating children with Down syndrome), the winning dogs (other pit bull parents who have the services you want for your children) do their stuff. This is an important tip for every budding pit bull parent, like myself. Study others' fighting techniques to know what works and what doesn't with any particular "opponent" and to hone in on your own personal fighting style. If you're not the fighter in the family, perhaps Dad should have a turn in the ring (with your ringside support, of course). And, make sure you take only fair fighting tips from the pros and other pit bull parents who have fought and left the ring victorious before you. Though only 2 dogs fight at a time -- true statement; so this is your fight and yours alone -- recruiting other pit bull parents and experts as advisers to your team gives you the best chance for success. As a pit bull parent, when a fight appears inevitable, we need to learn to retreat, if necessary, so that we can position/reposition ourselves in a way that strengthens our chances of winning the battle. Know the other dog's strategy and style. Be aware of all the potential outcomes. And, remain open-minded about all the different ways to get the decision to go your way. Because, ultimately, it is a committee-based decision!

In the final analysis: Please recognize that THIS IS JUST AN ANALOGY! I do not believe at all that I am at war with my home school system's Committee on Preschool Special Education (heck, I'm a parent-member) or with the administration, teachers, or therapists at my boys' current preschool (We address the boys needs as a team!). I do not walk into school or CPSE meetings with boxing gloves on (though make no mistake, I own a pair and pack a strong punch). I do not interpret everything "they" say as fighting words. But, in sticking with my pit bull parenting analogy, I do recognize that each time I come to the table seeking additional or different but always appropriate services and assistance for my children with special needs, the potential for disagreement with what I think should be prescribed is there. Being prepared for every potential battle AND acknowledging that, in the course of my children's lives there may be many battles, my goal is to strategize ways to win each and/or as many battles as possible (especially the big ones), leading up to and, ultimately, winning the war. That is, at each critical juncture, I need to find a way to get the services and assistance my children require (no more, but certainly no less, than we need) to help them grow into viable, independent and contributing members of our collective and non-profiling society (did I mention I hate profiling?).

If it's a dog's life, then I am the pit bull parent raising and protecting my pups to the best of my ability, seeking a peaceful path for us all but ready to do battle to ensure my babies have everything they need to grow up to be independent, well-bred, well-trained and well-loved members of our community. No one should expect any less of me... I am a pit bull parent!

FYI: Molly The Boxer, pictured here, is just that, a boxer (not a pit bull) though some people see her short, wide jaw and, believing she is pit, are immediately afraid of her (Did I mention I hate profiling?)

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My Motivation

Inspired by the http://happiness-project.com/, I began this blog in pursuit of my own happiness while raising my 3 children -- including identical twins with Down syndrome. On these pages, I endeavor to document the bits and pieces of my life that bring me the most happiness and keep me focused on all the positive stuff going on. Advocacy, Angels and Random Happy Thoughts. These are the threads of happiness that are inextricably woven through the cloth of my life. Staying focused and writing about these things is what keeps me Walking on the Happy Side of Life. I'd love it if you would "Take A Walk on the Happy Side" with me.

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THINK THANKFUL

There's barely a better sign that someone -- or some dog -- is happy to see you than when they wag their tail. My Bubba, a 13-year-old black Chow Chow has a curly spray of a tail that she very discriminantly wags... But always ALWAYS rapidly for me when she greets me as I walk into the house. I LOVE that!

I absolutely love the sound of that deep, guttural, laugh-til-I-choke belly laugh brought on by big, wet raspberries. My kids LOVE raspberries. And, I love to oblige just to hear that beautiful, joyful laughter that happens whether they're actually being raspberried or when they're just ANTICIPATING raspberries.

I'm thankful for the feather-soft skin and barely-there blonde peach-fuzz at the base of Brian's and Michael's neck. It is my most favorite place to kiss them... eliciting a giggle that sounds like the tinkling of a crystal bell. I LOVE it!

I love lying in bed beside my daughter at night... each of us reading our respective books. Then, when she finally closes her book and snuggles into her pillow, I listen for that easy and even breathing that indicates she's fallen peacefully to sleep. It is a routine I love. A peaceful way for both of us to end our day.

There is no greater joy than waking up to my children's beautiful sunshine-y smiles each morning!

I am thankful for my boys' healthy and strong immune systems. Brian's recent bout with pneumonia was short lived because his immune system (and the antibiotics) responded well and quickly. I've heard stories of pneumonia lasting several weeks. Thankfully, ours was a quick 3-day hospital stay with amazing results restoring him quickly to good health!

I LOVE the feeling of my sons' warm little hands holding mine when they want to show me an amazing discovery in the next room, or to feel safe, or to drag me and my attention away from the computer and back onto them (where it should be anyway). That simple gesture absolutely warms my heart with love.

I am thankful for my children's laughter. It is surely the most heavenly sound on earth!

As it turns out, I'm thankful my boys were home sick today. Thankful that they aren't TOO sick and thankful to spend a leisurely day with just them. We stacked blocks, painted, played with playdoh, blew bubbles, watched some movies, wrote with our magnadoodles, had lunch together and, finally, put together and played with our new hotwheels track set we got for Christmas. We even got the boiler fixed while we were all home during the 4-hour repair window they give you. What an EXCELLENT day! And, it's not even over yet!

Though I'm not thankful for childhood illnesses like croup which Brian is currently fighting, I am extraordinarily thankful that Brian, Michael and Olivia have healthy immune systems. As they've proven over and over again in their short lives, their little bodies are able to fight the nastiest of germs and win! Fortunately, Brian's already on the better side of it so we should all be healthy for Christmas!

I LOVE to see the sunshine sparkling on the water's surface. And, I'm thankful to live near enough to the water to see it almost everyday. It always catches my eye and makes me slow down to take notice. Ahhh, it soothes my soul every time.

I'm thankful that I have good friends who trust me to be a sympathetic listener when they need one.

I'm thankful for those few stolen moments I occasionally get to take for myself, to quietly watch the sun greet the day, in the wee hours of the morning, before every one else is awake!

It just occured to me that everyone should have a friend like Tammy! Someone who gets you out of yourself and always makes you laugh... even when you're talking about something serious. So, today, I'm thankful for my friend Tammy for helping me always to see the funny side of things.

Thank God for those occasional rainy days that let me relax and just be with my kids without rushing to make a plan or accomplish a task.

Thank God for my yellow fleece blanket. I LOVE to quietly slink into bed, hunker down deep and drift off to sleep... toasty warm!

Thank God for long, hot, uninterrupted showers. Especially after skipping a day because life got in the way!

Thank God that I was blessed with Brian & Michael before science found a way to prevent Down syndrome. Certainly,my life is better for their presence... just exactly as they are!

Thank God for my "online" girlfriends who truly hold me up in cyberspace when I feel like I'm crashing.

Thank God for my strange sense of humor. It keeps me thinking funny thoughts and laughing out loud all day long.